Exploring the hidden burden of living with Glanzmann thrombasthenia
This study aims to discover the real-life experiences of adults with Glanzmann thrombasthenia (GT), a rare inherited bleeding disorder, and those who care for them. While doctors know how to treat bleeding, less is known about how GT truly affects people's emotions, relationships, education, work, and family life. By listening to personal stories through interviews, the study hopes to uncover the 'hidden burden' of living with GT. The findings will help improve understanding, support, communication, and future research for people impacted by this condition. Taking part involves a single, confidential interview where you can share your experiences, and you'll receive a voucher as a thank you.
En un coup d'œil
De quoi parle cette étude ?
Glanzmann thrombasthenia (GT) is a very rare condition that affects how your blood clots, leading to bleeding problems. Doctors are good at treating these bleeding episodes when they happen. However, we don't know enough about what it's like to live with GT every day. This includes how it affects your feelings, your mental health, your friendships and family life, your schooling or work, and the impact it has on your family and those who care for you.
This study wants to change that. We want to understand the true, day-to-day experiences of adults who have GT and also those who look after someone with GT. By listening directly to your stories, the study hopes to shine a light on the challenges that aren't usually written down in medical notes. This 'hidden burden' can often be the hardest part of living with a long-term condition.
The information gathered from this study will be used to help everyone better understand GT. This can lead to improved support, better ways for doctors and patients to talk to each other, and guide future research to make life better for people affected by Glanzmann thrombasthenia.
Points clés
- Share your real-life experiences with Glanzmann thrombasthenia.
- Help uncover the 'hidden burden' of the condition.
- Interviews are confidential and done remotely for your convenience.
- Receive a £50 voucher as a thank you for your time.
- Your story can help improve future support for others with GT.
- No medical benefits, but a chance to contribute meaningfully.
Qui peut être éligible ?
You can take part in this study if you are 16 years old or older and have been told by a doctor that you have Glanzmann thrombasthenia. You don't need official medical records for us to confirm your diagnosis because GT is so rare and this study focuses on your personal experiences, not medical tests.
Caregivers can also join. This means if you are a parent, partner, brother or sister, or another family member who helps someone with GT, we would like to hear from you. For young people under 16, a parent or legal guardian will need to give permission, and the young person also needs to agree to take part if they are able to.
Cet étude pourrait-elle vous convenir ?
Répondez à ces questions rapides pour voir si vous êtes éligible. Ceci est un guide uniquement — l'équipe de recherche prend la décision finale.
- Avez-vous 16 ans ou plus ?
- Do you have a diagnosis of Glanzmann thrombasthenia?
- Or, do you care for someone with GT?
- Can you understand the study information?
- Are you able to provide your consent to take part?
En quoi consiste la participation ?
If you decide to take part, you will be invited to a single interview. This interview will last about 45 to 60 minutes and can be done by video call or phone, whatever you prefer. During this chat, you'll be asked to share your experiences of living with GT, or caring for someone with GT. We might talk about your daily routines, how you feel emotionally, your school or work life, your relationships, what it's like dealing with healthcare, and any difficulties you face. You don't have to answer any questions you don't want to, and you can stop the interview at anytime. With your permission, we might record the interview to make sure we accurately capture what you say. As a thank you for your time, you will receive a £50 digital voucher.
Risques et avantages potentiels
Emplacements (1)
- Online studyVille uniquement-, England
Questions fréquentes
What is Glanzmann thrombasthenia (GT)?
GT is a very rare inherited condition that makes your blood struggle to clot properly, which can lead to bleeding. It's not contagious.
Why is this study important if doctors know how to treat GT?
While treatments exist, this study wants to understand the day-to-day challenges and emotional impact of living with GT, which isn't always captured in medical records. This will help improve overall support.
Mes informations personnelles seront-elles gardées privées ?
Yes, your information will be handled confidentially. The study focuses on your experiences, not your identity, and details will be kept private.
Do I have to share everything in the interview?
No, you only share what you feel comfortable with. You can skip any questions or stop the interview at any time, it's completely voluntary.
Qui finance cette étude ?
The study is funded by Hemab ApS. However, they have no say in how the study is run, how interviews are done, or what the results show.
Comment en savoir plus
Amy Owen-Wyard
Parlez toujours à votre médecin généraliste ou spécialiste avant de décider de participer à une étude.
Intéressé à participer ?
Discussion
Discussion communautaire
Propulsé par notre forum à community.patient.info. Veuillez être respectueux — ceci n'est pas un avis médical.